You are here: Home / Archives for Wheres My Cape

So far, so good…

October 14, 2011 By 5 Comments

I am thrilled to post that we are having a good school year so far. That sounds like such a simple statement, but something that many parents probably take for granted.

Last year was, for lack of better terminology, a disaster. G-man dreaded school almost everyday. He did not want to do his homework, or read his books, or practice his sight words… or anything related to school. Getting him out of bed was a struggle. Getting him in bed at night was a struggle. Everything in between was an emotional landmine waiting to detonate. I tiptoed around his existence, attempting to circumvent the meltdowns. He never had behavior problems in school, per se, but his teacher tiptoed around him as much as I did, and catered to his every whim.

So, of course, a giant fear in my mind was that we would start this year, first grade, with greater expectations and harder work; therefore compounding an already established problem.

BUT…

I can’t speak highly enough about the teacher we have this year. She is organized (hallelujah)… everything is labeled and color-coded and sorted (double hallelujah), and G-man thrives in this environment! His day is structured, timed, and check-listed to exhaustion, and this makes us HAPPY!  He loves school and is a completely different child!

I do not expect that this will be forever, but for now, I will be thankful for such a blessing, however long it lasts!

Psalms 51:15 “0 Lord, open you my lips; and my mouth shall shew forth Your praise”.

Hopefully,

Cape wearing Mommy

Filed Under: Emotions, Encouragement, Gratitude, JOY, OCD, Tourette Syndrome Tagged With: , , , ,

I’m joining the circus

September 21, 2011 By 1 Comment

I should join a circus.

Why, you ask?

Because I’m a pro juggler. Just like every other mom I know.

Kids. Get them up, dressed, fed, groomed, to school, to after school/extracurricular activities, fed, homework, fed, bathed, fed, in bed.

A job outside the home. Enough said.

Church. Activities associated with church.

Laundry, sweeping, mopping, dusting, laundry, dishes, laundry, bathrooms, laundry….

Relationships. Time for self……….   What are those?!?!?  Who has the time?

You all know your lists look, or at least feel, just like these; plus a hundred other things most days. I’ve posted at least twice about slowing down, being still, and those are fabulous ideas. It just doesn’t seem reasonable most days to take an hour or two and just sit. How unproductive is that?  It’s not even COMFORTABLE for me. Mach 10 is my pace. People depend on me, and on my endless lists getting done. But I’ll say it yet again, put the brakes on. Take a moment for yourself. How can we continue to take care of everyone else in the world if we do not take care of ourselves first– mentally, physically, Spiritually?

Slow me down, Lord!
Ease the pounding of my heart
By quieting of my mind.
Steady my harried pace
With a vision of the eternal reach of time.

Give me,
Amidst the confusions of my day,
The calmness of the everlasting hills.
Break the tensions of my nerves
With the soothing music of the sighing streams
That live in my memory.
Help me to know
The magical restoring power of sleep.

Teach me the art
Of taking minute vacations of slowing down to look at a flower;
To chat with an old friend or to make a new one;
To pat a stray dog;
To watch a spider build a web;
To smile at a child;
Or to read a few lines from a good book.

–Wilfred Peterson

Putting my juggling pins down for FIVE MINUTES,

Cape Wearing Mommy

Filed Under: Encouragement, General, God's presence Tagged With: , ,

IEP FAILURE!

August 22, 2011 By 3 Comments

Last year, our sweet G-man started Kindergarten. What a big year for us!  October of last year was also when we got our Tourette diagnosis.

Being the strong, advocating, proactive parents we were, we immediately met with G’s teacher, and the Developmental Specialist of the school. Although G wasn’t having any “trouble” per se in school, she urged us to go ahead and jump on the IEP process, getting a safety net in place for him should trouble arise. I thought this sounded like a fabulous plan, so I started jumping through the hoops of obtaining the necessities for the process. I obtained a letter of diagnosis from G’s diagnosing Neurologist and pranced back to school. PIECE of CAKE!  I had read so many horror stories of the IEP process, about uncooperative school personnel and school districts and endless denials and appeals. This was going well and I was feeling good.

Then the trouble began.

My letter wasn’t adequate, said the Developmental Specialist. It only named his diagnosis, not the “issues” he had.  But wait….. we just discussed that he hadn’t had any real trouble yet … (in Kindergarten, no trouble arose because his teacher allowed him to spend unlimited time sharpening the classroom pencils and sorting them, point down, with exactly 10 pencils in each of the 6 containers …. but that’s a WHOLE different post)….

I digress.

So I trek to a Child Psychologist, with whom I waited for about 4 weeks to get an appointment. G-man performed beautifully in his interview, earning himself a hefty diagnosis of Obsessive Compulsive Disorder, which often accompanies Tourette Syndrome. And I earned myself a hefty four page letter spelling out every single complication with school that G-man might EVER have until college. Into the school I marched, triumphant as ever.  THIS was the ticket. It was a little harder than I originally thought, but we were on our way!  The Developmental Specialist glanced over the letter, and VOILA!  It was golden. So the next step is to hand it over to the principal to continue the process.

At this point, it’s Christmas break, so we had a bit of an interruption.

January ….

February ….

I never heard a peep back. SO, at the beginning of March I approached them again. It’s spring, we all have a fresh perspective. And we are still waiting on the principal to look it over.  After three face to face visits in a three week period, I get my call from the principal.  She will address it FIRST thing after spring break.

~~ big deep cleansing breath~~

And finally, the day comes. She calls. She leaves me a message. I return the call, only to hear that there is NO reason in the world to LABEL our G-man. He’s brilliant, he’s having NO trouble, there are NO COMPLAINTS from teachers, WHY would we want to put something in place that will follow him until he graduates high school, when this might NEVER even become an issue?  Obsessive-Compulsive Disorder doesn’t even qualify for IEP coverage (skimming over that minor little  TOURETTE diagnosis).

And at this point, we are in the last week of school, and I can clearly see now it’s a much larger uphill fight than I ever thought. So add me to the list of  those people who the IEP process has failed, at least on the first attempt. Perhaps I could’ve been a stronger, in their face type of advocate from the beginning … but my child has to walk these halls for the next 5 years, as well as his two siblings right behind him.  I have read ALL the legislation pertaining to IEP and Tourettes, and exactly how and why it qualifies.

So now, we have a brand new school year beginning. Where do I go from here?

Deciding my next move,

Cape Wearing Mommy

Filed Under: IEP, Journey, OCD, Parenting, Tourette Syndrome Tagged With: , , , ,

Back to school blues

August 19, 2011 By Leave a Comment

It’s that time around my house, as I’m sure it is most of yours. Back to school time has arrived!  The summer is over (although the 100+ temperatures are not) and it’s time to fall back into a strict routine. I, to be frankly honest, do not love this time of year… I am rather sad to have a house devoid of my little sidekicks.

This year, my sweet twins have started Kindergarten, and I have a big First grader on my hands. The fear of juggling three kids in “big school” is REAL for me. I’m sure that those with older children are thinking that I’m merely getting started, and being scared now is silly…  but I’m SCARED!

Three backpacks to pack, three (different) snacks, three (different) lunches, six shoes EVERY SINGLE DAY…. sheesh I’m tired already! This doesn’t even speak to the daily ins and outs of pickup, dropoff, homework, reading, quality family time… OH YEAH and that little thing called the emotional turmoils of young children requiring parental attention and intervention.

I have such a strong desire for my children to do well and succeed, and be happy, accepted, and socially appropriate, just like every other mother I know. What will this year bring? We can’t know, but can only be hopeful that our desires will be fulfilled.

Hopeful for YOUR new school year,

Cape wearing Mommy

Let us hold unswervingly to the hope we profess, for he who promised is faithful.  –HEB 10:23

Filed Under: Change, Journey, Parenting, school Tagged With: , , ,

Focus

July 21, 2011 By Leave a Comment

One of the things we like to do to pass the long, hot summer days is to go to the science museum. It is about a 35 minute drive for us, so we have a yearly membership. The kids are always entertained, and it’s so much more educational than parking them in front of a television when it feels like it’s 147 degrees out.

Yesterday was one of those days.

While this blog focuses on “hidden disabilities,” I would like to point out what I view as a strong hidden ABILITY. G-man has TS+, with his “plus” being OCD. There is much discussion about the genetic components of Tourettes, but no one has definitively identified the mechanism of heredity. What is known, however, is that mothers of children with Tourettes have a strong tendency to have OCD. This holds true in our case, as I too, to some degree, am most certainly plagued with OCD.

With that aside, I go back to the science museum. I am amazed at my G-man’s ability to focus. He can find one exhibit that catches his attention, and he can spend all day planted there. While most children in the museum (my other 2 included) jump from one exhibit to the next, excited about the over stimulating stream of new sights and activity, my G has all 5 senses engrossed in one activity. Sure, this can cause trouble when my other 2 are ready to move on, or the line behind G-man becomes increasingly long, and I have to FORCE him to move on … But his focus is amazing to me. His attention to detail, for a 6 year old, is unmatched. During the school year, we had some trouble with transitioning from task to task. I’m sure, in the future, this will continue to be an issue. But I prefer to view this as an ABILITY that not everyone has. Some day, hopefully my G-man will choose a career that capitalizes on his ability to focus. An engineer, perhaps? Or an architect, where fine detail is oh-so important….

Until then, we will just have to work through the complications of his “ability.”

Amazed,

Cape wearing mommy

Filed Under: OCD, Parenting, Tourette Syndrome, Uncategorized Tagged With: , , ,

What a Mighty God

July 9, 2011 By Leave a Comment

I have nothing prolific to say today.

It’s summer, and we are running around like ants who have just had their ant hill stomped on. It’s 186 degrees with 150% humidity down here in sunny, smoldering Alabama… (or so it feels.)  So I will just be short and sweet, and share the song that’s been stuck in my head all day.   I’m sure most of you know the tune.

What a Mighty God we serve
What a Mighty God we serve
Angels bow before Him
Heaven and Earth adore Him
What a Mighty God We serve!

I had nothing prolific to say today ….  Or so I thought!

Cape-wearing Mommy

Filed Under: Encouragement, God's presence Tagged With: , ,

Conversations in the quiet place

June 29, 2011 By Leave a Comment

I am not certain how you all out there are handling summer, but I am attempting to keep my kids as busy as possible. Idle minds seem to find trouble, at least in my house….

One of my kids’ favorite things to do is go to the library. They love to pick out books and “read” (which at 5 and 6 is minimal…), swap books a million times, settle on two or three, and head home. For my sweet G-man, however, this is easier said than done.  Making a decision of SUCH GRAVITY, to him, is nearly impossible. Our conversations go about like this…

M: G, pick out TWO books to take home.

G: But I want THREE.

(Note here, if I said 279 books, he would say 280. The drawn line is just too tempting to cross.. We had discussed TWO books about 12 times in the car on the way, preparing for this discussion)

M: We decided on two, now pick two.

G: But I LOVE THREEEEEEE. LOVE them. LOOOOOVVEEEE THEMMMM.

M: We decided on two. If you get three, everyone gets three, which equals nine books that mommy has to keep up with. So TWO. TWO BOOKS.

G: I just can’t decide. What if I pick the WRONG two books and I’m stuck with them for a whole WEEK until we come back to the library to exchange them? What if I decide that these aren’t REALLY the books that I love?  What if they aren’t as good as they look?

and so on and so forth… 

Talking him out of these circular discussions over such trivial things is part of my daily routine, and my daily challenges.

What are your daily challenges??

Attempting sanity in the summer,

Cape wearing mommy

and so on, and so forth…

Filed Under: General, OCD, Parenting Tagged With: , ,

…..and then there’s bedtime

June 16, 2011 By Leave a Comment

I love my kids. That might seem a bit obvious, but I am starting on a positive. This should be a positive sandwich kind of blog, right? As in, start with a positive, CONSTRUCTIVELY complain in the middle, and end with a positive. Sound good? 

Parenting isn’t an easy job. Again, another obvious statement. At my house, there are 2-five year olds and 1-six year old with Tourette Syndrome and OCD. OK, so my job might be slightly more challenging than the average parenting gig, but I give credit to all the parents out there. NOT EASY.

So on any given day, any combination of the 3 little people in my house might wake up in a good mood, a bad mood, a defiant mood, or a whiny mood. Especially with G-man, any little bump in the road or change of carefully-laid plan might change aforementioned great mood into aforementioned bad mood, terrible mood, or all out HORRIBLE bad mood. Mood swings at my house are common, minimally controllable, and in multiples of 3 (which really is exponential, and not just a multiple of 3).

So there’s the middle of the sandwich. The meaty complaint. Now the constructive part.

I dance, I sing, I entertain, I attempt a routine. I make careful plans, and I try to stick to them. I will do ANYTHING to keep the natives from getting restless. I plan fun activities as much as possible, and will do anything to elicit a smile. Really they are pretty happy, good-natured children. And I really do enjoy them! But they are children. When things go terribly awry, I can whip out some pretty hefty hostage negotiation skills. I can talk or tickle my way out of some pretty serious preschool angst. 

So by the end of the day, I have played chauffeur, alarm clock, short order cook, laundry maid, nurse, boo-boo kisser, maid, dishwasher, clothes sorter, Barbie shoe-finder, T-Rex dinosaur chaser, tent erector, referee, policeman…. and on, and on, and on….  and done it with a smile…

I am EXHAUSTED!  And thankfully, there’s bedtime. When there’s three sets of hugs and three sets of kisses; three nite-nite prayers and three tuck-ins.

I love my kids.

Filed Under: Encouragement, General, Gratitude, humor, Parenting, rest, Tourette Syndrome Tagged With: , , , ,

with or without a label….

June 10, 2011 By 5 Comments

A diagnosis of Tourette Syndrome usually takes, on average, 3 years. Or so I read. “Why?” one might ask… 

Due to the complexity of Tourettes, many tics are often misdiagnosed initially; most commonly as asthma (with respiratory tics) or visual problems (eye blinking tics).  They can resemble muscular troubles. Or they are sporadic, coming and going, moving around and ever-changing. And then there’s the waiting process– once Tourettes is suspected, the tics must persist for a year before qualifying for a diagnosis. 

Our diagnosis came within a matter of weeks, thankfully.

We noticed G-man’s tics one afternoon, as he was throwing a football. He developed this bizarre-looking shoulder shrug followed by a right arm drop. It just appeared. Literally, almost immediatlely. Initially thinking he had hurt his arm, we felt around for musculoskeletal issues, but he said it didn’t hurt. Since my husband and I are both in the pediatric medical field, our immediate second thought was that it appeared to be Neurologic.

Conveniently, our neighbors happen to also be a Pediatrician married to an Orthopedist. So we went for a door-to-door consult. They agreed that it looked Neurologic as well.  Sparing you the lengthy differential diagnosis list and discussion that followed, we ruled out most scary things such as meningitis (no fever, photophobia, headache, neck pain…), and moved on to research the world of Neurologic tics. After minimal time on endless Medical Journal research sites, my husband and I both landed on Tourettes.

A prompt email to our Pediatric Neurologist colleague (who heads the Pediatric Tourette clinic in our state) scored us a quick appointment (versus the 3 month wait for normal referrals). After observing G-man in person and on our home videos, and interviewing us regarding his behavior patterns (a whole different topic), he said undoubtedly, this is Tourettes.

How did we forego the year wait for a persistent pattern, you ask?  After realizing what hit us in the face like a ton of bricks… in retrospect, G-man had been having tics since age THREE!  We thought back to when he was three and four, and he would do a bizarre looking gasping breathing pattern for a minute or two, then stop. It was so impressive at times that we took him to the Pediatrician, and considered even a Cardiologist; but he never had true “respiratory” symptoms or color changes, or trouble with exertion. Then the summer prior to the shoulder tic, for a brief period he did some eye blinking movements. I thought he needed a haircut!  So we had our waiting period, we just didn’t realize we were living it. As for the behavioral component, G-man has Obsessive-Compulsive Disorder. I have said he was “wired differently” since he was very very young. He fits the pattern so classically.

The devastation that follows a diagnosis of this magnitude is epic. If you are reading this, then you have probably felt that in some capacity. The diagnoses are different, but the feelings are the same. The gamut of emotions, the enormity of the grief for your child (or spouse, or family member…) is overwhelming.

And then, shifting things back into perspective, we realize that this is not a lethal diagnosis. Life as we know it is no different. The way we interact with our sweet boy and the challenges he has given us are no different, with or without a label. He is still the precious, enigmatic, brilliant, stubborn, particular, amazing love of our lives.

Filed Under: Diagnosis, General, OCD, Tourette Syndrome Tagged With: , ,

Happy Birthday!!!

May 29, 2011 By Leave a Comment

It has been Birthday season here at our house. And when I say Birthday season, I am SERIOUS!  If you have read my bio, you understand that my sweet G-man was one year and two weeks old when I brought home TWINS. So it’s that time of year. We have celebrated G-man with his own super special day loaded with every treat I can spoil him with. Then, in between, I have one GIANT mega blowout party. CHECK!  So all that is left for us is the twins’ actual birthday, when they can have their own super special day loaded with treats… and I’m DONE!  For a YEAR! 

Celebrating another year of a child with a hidden disability is not just ANY birthday… Don’t get me wrong, I LOVE LOVE LOVE  celebrating the anniversary of EACH of my kids’ birth. I LOVE birthdays in general. Mine, yours, ours…. but a birthday with my sweet G-man is like a small victory. A triumphant, “We’ve made it!”  A new year to start fresh. To do what we do best, better; And to improve upon the things we did not do so well with…  To celebrate the tiny victories of every day; And to put to rest the mental battles that we failed. 

So HAPPY BIRTHDAY to my wonderful kiddos! And what a sweet celebration we have had!

Ecclesiastes 3: A Time for Everything
There is a time for everything, and a season for every activity under heaven:
a time to be born and a time to die, a time to plant and a time to uproot,
a time to kill and a time to heal, a time to tear down and a time to build,
a time to weep and a time to laugh, a time to mourn and a time to dance,
a time to scatter stones and a time to gather them, a time to embrace and a time to refrain,
a time to search and a time to give up, a time to keep and a time to throw away,
a time to tear and a time to mend, a time to be silent and a time to speak,
a time to love and a time to hate, a time for war and a time for peace.

Filed Under: General, Gratitude, Journey Tagged With: , , , , ,
« Older Posts